Screen4Rare celebrates Rare Disease Day on 28 February 2022
Rare Disease Day raises awareness and generates change for the 300 million people worldwide living with a rare disease, their families and carers. This campaign is the globally coordinated movement on rare diseases – working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
In light of this, Screen4Rare advocates the importance of newborn screening (NBS) as a key element to access to care. The group’s ultimate objective is, through policy engagement, to work towards ensuring that all babies can have equitable access to NBS; a life-saving tool for conditions such as severe combined immunodeficiency (SCID).
Read more here.